Sex ed missing for people with Autism Spectrum Disorder

Nova Scotia has little support for adults with ASD

Allistair Fraser shows off his skecthbook at the Nova Scotia Austism Centre

Allistair Fraser often wonders what it would be like to have a girlfriend.

“I’m basically a hopeless romantic with no one to share it with,” the 32-year-old says. Fraser is a self-taught artist who lives alone in his Fairview apartment and spends most of his days shelving books at the Nova Scotia Autism Centre on Spring Garden Road.

He has a high-functioning case of Autism Spectrum Disorder — a lifelong neurological condition that affects a person’s ability to communicate and to relate to others.

The disorder limits a person's social interactions and communication skills, making it difficult to form romantic relationships.

“Sometimes I feel pretty lonely,” Fraser says. “I like to drink tea and sometimes tea is meant for sharing.”

Making sense of the mixed signals, subtle glances and emotions of dating is at best confusing even for the developmentally normative person.

But people with ASD are at a greater disadvantage because their disability prevents them from reading other people’s feelings and picking up on non-verbals cues, such as flirting.

“If you don’t pick up on those non-verbals then navigating sexuality is nearly impossible because it’s so much non-verbal,” says Emily Martinello, a sex educator who is writing a sexual health curriculum for an ASD support group in Wolfville.

Each year Nova Scotia spends $40 million to fund early intervention programs that support the diagnosis and assessment of autism in children.

Yet the province does not fund any programs aimed at teaching sexual health or relationship-building to either children or adults with ASD.

When the province released the Autism Action Plan in 2009, sexual education was not included among the 53 recommendations to improve the current support services for adults.

Vicki Harvey, outreach coordinator for Autism Nova Scotia, sat on the committee for the report and says sexual health was one of the last priorities.

“Our focus was on housing, employment and health related things. To be frank, I think that sexuality and relationship building was just something that wasn’t on the top of what we’re trying to accomplish … we probably could have made well over 100 recommendations, but we had to limit what we could do.”

Without proper sexual health knowledge, adults with ASD can face serious risks when they want to seek independence from their families, says David Fainstein, an autism behavior interventionist, and a graduate student of Education at Mount Saint Vincent University.

“A 19-year-old girl demands to go live on her own and her parents are supportive, but does she have the skills she needs to make sure she’s not taken advantage of? Because someone can see that she’s vulnerable and can easily see her communication skills are not like other girls.”

Fainstein says teaching someone how to cook or manage their finances is fine, but those skills don’t matter when it comes down to whether or not they are healthy or sexually happy.

“Why would you teach them all those skills you think they need above and beyond something like sexual health which is fundamental in society?” he asks.

Martinello agrees, and says there needs to be more resources to support sexuality in people with ASD because most do not receive a proper sexual education growing up. She says children on the spectrum are often isolated from their peers and are excluded from the informal teaching children provide to each other by joking around about sex.

Fraser remembers learning about sex by doing his Grade 9 sex education assignments alone in the school library because he felt ashamed of puberty and says his classmates bullied him.

Michael Price, a private autism consultant, believes there would be more opportunities for people with ASD to be in romantic relationships if there was more support from the province to help them to initiate relationships.

“People have the same relationship goals as their peers but because they don’t have the same social or communication skills they have a harder time.”

One of the biggest social challenges for Fraser was just finding the courage to go out and eat at a restaurant with someone else other than his family.

“For years and years and years I was afraid I had no table manners … I always had this irrational fear that I’d be judged on the base of lack of manners.”

Harvey says many of the other members of Autism Nova Scotia would like to have someone special in their life, but meeting someone or learning to feel comfortable with a new person is difficult.

Learning both verbal and non-verbal communication is one of the life long challenges those with ASD face, especially when it comes to being able to articulate their own sexual needs and feelings.

Stephanie Mitelman is a sexual health educator who teaches at both McGill and Concordia University. In December she hosted a workshop in Halifax that taught professionals and parents of children with autism how people on the spectrum process sex differently.

People on the spectrum have their own kind of sensory perception, she says. When it comes to sex all their senses are heightened at the same time. This means things like the taking on and off clothes could cause a drastic change in temperature, or wetness from a kiss or intercourse is felt much more intensely.

Mitelman says the goal of her work is to help those with ASD learn to make a “sensory map” of their own bodies and figure out what kind of touch feels good, so they can better communicate their sexual needs to a partner.

But Price says, “there’s still a lot of stigma with people with an intellectual disability having a sexuality.” Before sexual health is recognized as a priority, he believes society has to accept that people with ASD have the same sexual needs as everyone else.

“Just because someone has an intellectual disability doesn’t mean they have an emotional disability.”

And listening to Fraser it’s easy to see his girl problem is not so different from the woes of the average 32-year-old man.

“The problem I have with relationships is I never thought of myself as that attractive,” he says. “I always thought that if I wanted to have a girlfriend I have to have money, cushy job, exciting adventures … you can’t be defined by being a nice person.”

A version of this article originally appeared in the Halifax Commoner.